I previously wrote an article called “Is Gluten Sensitivity Real” which critiqued a spate of news reports suggesting that nonceliac gluten sensitivity (NCGS) doesn’t exist. These news stories referred to a study indicating that some people who believed they were reacting to gluten were actually reacting to a class of poorly absorbed carbohydrates (which include wheat, among many other foods) called FODMAPs.
You can read the full article above for details, but the takeaway was that the study those stories were based on in no way disproved the existence of NCGS, nor did it overturn the large body of evidence that links it to a variety of health problems ranging from type 1 diabetes, to allergies, to schizophrenia, to autism spectrum disorders. There is little doubt among those who are familiar with the scientific literature that NCGS is a real condition.
Yet despite this, we continue to see headlines in the media like this:
- Time for Some Grains of Truth About Gluten
- Eat More Gluten: The Diet Fad Must Die
- Why We’re Wasting Billions on Gluten-Free Food
These stories—and many other like them—argue that nonceliac gluten intolerance is rare, and that people who eliminate gluten from their diet are just silly fad followers. In this article, however, I’m going to present three reasons why NCGS is not only a bonafide condition, but may in fact be a much more serious problem than celiac disease.
#1: Celiac Disease Is Far Easier to Diagnose Than NCGS
According to some estimates, for every diagnosed case of celiac disease (CD), there are 6.4 undiagnosed cases that remain undiagnosed—the majority of which are atypical or “silent” forms with no damage to the gut. (1) This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)
I believe that patients with NCGS are even more likely than patients with CD to go undiagnosed. Most gastroenterologists today know how to screen for celiac disease. They will typically test for antibodies to antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium, and if positive do a biopsy to determine if tissue damage is present.
However, we now know that people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in CD. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin. What’s more, people can react to other types of tissue transglutaminase, including type 3—primarily found in the skin—and type 6—primarily found in the brain. (3, 4, 5, 6, 7, 8)
Why the “gluten intolerance haters” are wrong.#gluten #glutenintolerance
So, imagine a scenario where the patient is reacting to deamidated gliadin, glutenin, gluteomorphin, and either transglutaminase-3 or -6, but not reacting to alpha gliadin or transglutaminase-2—which are the antibodies used to screen for CD by most doctors. They will remain undiagnosed, and may continue to eat gluten for the rest of their lives, putting themselves at serious risk for autoimmune and other diseases.
This is not a hypothetical situation. In fact, I see cases like this all the time in my practice. Here is a screenshot from a recent test I ran on a patient. I use a much more thorough test for wheat and gluten intolerance called Array 3 from Cyrex Laboratories. Unlike other tests, it measures antibodies not only to alpha gliadin and transglutaminase-2, but also many of the other components of the wheat protein I mentioned above, as well as transglutaminase-3 and 6.
This patient is not reacting to alpha gliadin or transglutaminase-2. Had they been tested by their conventional doctor, they would have been told that they do not have celiac disease or gluten intolerance.
However, as you can see, she is reacting quite significantly to several different components of wheat, including:
- Native and deamidated gliadin and gluteomorphin, which are compounds produced during the digestion of wheat.
- Glutenin, which is the other major fraction of the wheat protein, along with gliadin.
- Gliadin-transglutaminase complex, which indicates that the patient is experiencing an autoimmune reaction to wheat.
- Transglutaminase-3, which is expressed primarily in the skin, and to a lesser extent in the brain and placenta.
- Transglutaminase-6, which is expressed in the brain and nervous system.
When this patient consumes wheat or other gluten-containing foods, she may not experience the classic digestive symptoms associated with CD or NCGS, because she is not producing antibodies to transglutaminase-2 (which is mostly expressed in the gut). Instead, her intolerance of wheat could manifest in skin conditions like eczema or psoriasis, and in neurological or brain-related conditions like depression, peripheral neuropathy, or ADHD. (9, 10)
Worst of all, if this patient had not had this test, and had continued to eat wheat and gluten for the rest of her life, it’s likely that she would have been at much higher risk for the long list of serious conditions that are associated with gluten intolerance, such as multiple sclerosis, ataxia, diabetes, and even Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). (11, 12, 13, 14)
Unfortunately, this patient is not the exception—she is the rule. I’ve seen so many test results just like this, where the patient would have been misdiagnosed as not having gluten intolerance had they gone to a conventional doctor.
This presents another obvious problem, of course: if very few health care providers are doing the correct testing for gluten intolerance (like the panel from Cyrex above), then how can we possibly know what the true prevalence of NCGS is? We can’t—but given everything I’ve written above, we can certainly suspect that it’s much higher than currently believed.
According to Cyrex Labs, 1 in 4 people that take the Array 3 panel test positive for some form of wheat or gluten intolerance. Granted, this is not a representative sample, since most people that take the Cyrex panel are dealing with chronic illness of some kind.
Even with the limitations of current testing, however, some researchers have speculated that NCGS may affect as many as 1 in 10 people. (15) I suspect this is accurate, if not conservative.
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#2: Current Cultural Attitudes toward NCGS Mean More People Will Remain Undiagnosed
And for reasons that I do not fully understand, they do so with an almost religious fervor.
The “gluten intolerance haters” seemed to emerge in force after a paper published by Gibson et al. in 2013 made the rounds in the media. This study found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten, but instead were reacting to a group of poorly absorbed carbohydrates called FODMAPs. (16) Aside from the fact that this study did not in any way disprove the existence of NCGS, from a practical perspective the study findings would not have changed the behavior of most people with IBS who identified as being gluten intolerant, since wheat and many other gluten-containing grains are FODMAPs and should thus be avoided by these patients.
More importantly, however, in the last two years since the Gibson paper new studies have been published that directly contradict Gibson’s findings and strongly suggest that patients with IBS do, in fact, react adversely to gluten—and not just FODMAPs.
For example, a new double-blind, randomized trial out of Iran was specifically designed to determine whether a group of IBS patients reacted to gluten specifically, or simply improved for other reasons on a gluten-free diet. (17) Here’s how it worked:
- 80 patients followed an “almost-gluten-free” diet (dietary compliance was considered optimal if consumption of gluten was below 100 mg/day, the equivalent of roughly 1/8 tsp of wheat four).
- After six weeks, the 72 patients that complied with the diet and experienced significant improvement were then randomized into two groups: Group A, and Group B.
- Group A (35 patients) was given a 100 g packet containing a gluten meal (free of FODMAPs). Group B (37 patients) was given a placebo packet (100 g) containing rice flour, corn starch, and glucose.
- Patients in both groups consumed the powders for six weeks, while both groups continued on gluten-free diets.
After six weeks of the diet symptoms were controlled in only 26% of the gluten group, compared with 84% of the placebo group. In the gluten-containing group, all symptoms—especially bloating and abdominal pain—increased significantly one week after starting the gluten.
The authors point out that it is important to properly identify gluten intolerance and distinguish it from FODMAP intolerance because some recent research suggests that long-term low FODMAP diets may have adverse effects on the gut microbiome. One study found that a low FODMAP diet compared with a habitual diet reduced the proportion and concentration of Bifidobacteria, one of the most beneficial species of bacteria in the colon. (18) (Authors note: I will be exploring this issue in more detail in a future article.)
But I would add another equally serious consequence of misdiagnosing gluten intolerance as FODMAP intolerance, which is the increase in risk for numerous and sometimes serious diseases that occurs when someone with NCGS continues to consume gluten.
#3: Many Doctors and Patients Aren’t Serious Enough about NCGS Treatment
This last point is a natural consequence of the first two. If detecting NCGS in conventional medical settings is unlikely, and there is a strong cultural backlash against it, where does that leave the millions of people that are likely suffering from NCGS without even knowing it?
Even if they do suspect that they are gluten intolerant, they might be dissuaded from pursuing a strict gluten-free diet by their friends, social media contacts, or even their doctor, all of whom are likely uninformed on this subject and do not understand the deficiencies in conventional testing or the complexity of the topic.
Based on the research I’ve reviewed in this article, and several others I linked to here, we should be more aggressive—not less—in diagnosing and treating gluten intolerance.
We need greater access to test panels like Cyrex Labs Array 3, which is the only commercial test outside of a research setting that screens for antibodies to many of the proteomes in wheat, instead of just testing for alpha gliadin. We need better training for doctors on how to recognize the myriad of symptoms and conditions associated with gluten intolerance, so they don’t make the common mistake of assuming that the patient isn’t gluten intolerant if they don’t have digestive problems. And we need some prominent journalists to educate themselves, step forward, and take responsibility for treating this as the serious, potentially life-threatening problem that it is.
Even without access to tests like Array 3, an elimination/provocation trial where gluten is removed completely from the diet for 60 days and then reintroduced is still considered to be an accurate method of assessing gluten intolerance. Doctors should be much more proactive about recommending this to patients, and despite the claims of some mainstream nutritionists and dietitians to the contrary, there is no risk to removing gluten from the diet. (19) If anything, people on a gluten-free diet are more likely to increase their intake of essential nutrients, especially if they replace breads and other flour products with whole foods (rather than with gluten-free flour alternatives).
This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (21) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period.
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I have had issues with my stomach for about ten years. But it was so subtle that I thought that it was just my ‘normal’ stomach. Well the diarrhea lasting for hours became more frequent and the bloating and feeling like I could pass out at any moment during these episodes, I do get migraines and I am more tired and I forget a lot of things all the time. My husband was concerned that I could have some serious health issues. I’m only 32 and this past Dec. I had a terrible episode that was also accompanied by the stomach flu, I couldn’t eat for a week without having some extreme pain. So I choose to eat crackers and water which caused some serious issues with bloating. I finally went to see a gi doc after a trip to the er and he said i tested positive for celiac and crohns disease, but people who test positive for those usually have a false positive. But I had to have and endoscopy and a colonoscopy because I have a strong family history of celiac disease, my little sister has had it since birth, my dad, his sister and my cousin. All from my dads side of the family. Well there was nothing wrong with my stomach or intestines and my biopsies came back all negative! And my gi doc was rudely sure that this is just my body and it’s normal way of digestion!?!? He now wants to run a test of overgrowth of a bacteria and see if that’s causing the problem. After eating pasta without sauce, which I thought was irritating my stomach, I was so bloated and the pain started, I started a gluten free diet and my stomach feels so much different. I don’t have a ‘heavy’ feeling in my stomach anymore, no more painful bloating or gas too! Feel kind of sad that a gi doc doesn’t want to really explore this issue and because of this I am going to have to get a second opinion.
I was diagnosed as a latent celiac (after blood work of 204 when range was suppose to be 20 or less) by my gastroenterologist back in 2008 and was told not to go gluten free because there was no reported damage to my vili – worse advice ever.
In 2009 got terribly sick, weight just fell off me and my doctor said “why do you think you’re losing weight” and raised the ‘C’ word and prescribed me asthma inhailers because having trouble breathing – I said thanks but no thanks, my lungs are fine and got them tested and they were. I decided to go gluten free because I had nothing to loose – nothing else was working. It took me 6 months before I started to feel better and many many times I questioned not just my direction I was going in, but whether I would ever feel like me again. I have oral lichen plants as well which is another auto immune disease but in 2012 I started to let a little bit of gluten creep back in after holidaying overseas and because my gut doesn’t react like some peoples do, I thought can’t be doing much damage but I was – just can’t see it. In 2015 got a frozen shoulder and developed carpel tunnel and peripheral neuropathy in my hands and feet and slowly gluten has been poisoning my body – terrible headaches as well.
A few weeks ago I decided to go completely g/f again, cut out most sugar that I can and think it’s improved things a lot already. I am hoping the neuropathy will keep improving as still not back to how I was. I am wondering if I cut out dairy will that make a difference too but because I don’t react to it once again it’s that doubt that lingers – if you don’t get a reaction you think oh it must be okay but is it? Giving up dairy would be. very hard not just physically but emotionally like grieving for another loss. Has anyone had anything similar to my journey I’d love to hear about it if you have. Keep strong my G/F friends 🙂
Yes I have RA after 4 years I started getting shooting pain in my feet. I recently read a book Medical Medium, he sez autoimmune is actually Epstein Barr virus and wheat dairy eggs corn and soy feed the virus. I did his 28 liver cleanse and the shooting and burning pain and hot flashes and horrible night sweats stopped in first 10 days. If you have frozen shoulder that’s caused by shingles virus. Look up book. ✌?️
THANK YOU!!! Yes, shouting!
I have been living and eating a gluten-free life for three-plus years now. I’ve been tested twice and come up negative buy Local doctors; but I am well aware of the differences between when I am eating gluten, and when I am not eating gluten. How do I get in touch with a doctor that will do serious Labs testing?
You could try reaching out to Progressive Medical Center in Atlanta, GA. They took food sensitivities very seriously, and proposed a sensible approach to determining a healthy lifestyle/food program accompanied by natural remedies to balance symptoms during the elimination period.
Rebecca,
Find a functional doctor. Get the test done by Cyrex Labs –Array 3 tells you all your sensitivities but there are several arrays one of which detects how leaky the gut is. It is great that you have been avoiding gluten! However, if you have been doing this long enough it might not come up on the test. (That happened with my son but we got Array 3 anyway because we felt that there was something else –which turned out to be egg!) I am NOT telling you to eat gluten to see if you react. Just find a functional doctor. Sometimes they are called holistic.
I will “try” to keep this short.About two years ago I was so scared because I felt like I was slowly dying. I had been progressively getting worse for about 4 years previous. I couldn’t lift my right arm up, it didn’t hurt, it just wouldn’t go up past my shoulder. I also had these horrible muscle cramps in my toes that would completely twist my toes all around, I also had nodular acne and wanted to know what was happening. I was told by the dermatologist that this happens to some women in their late 30’s, and pumped me full of medications. They did not work, I then ended up seeing a neurologist, they did a MRI and Lumbar puncture and they confirmed MS. I was to start MS medication but for some reason for almost a month the order could never get filled correctly so I did not get it, I decided to try what some people stated on web searches had done. No gluten, low sugar, low dairy. I didn’t expect much other than for it to maybe make me feel a little better while I waited for the whole medication thing to get sorted out. The first week was horrible, but after that everything changed and I mean everything. I was able to completely use my arm in about two weeks, the constant fatigue continued to improve with time, the upset stomach ended, within about one and half to two months all symptoms gone. I switched MS doctors and never started medication, my MRI’s have been unchanged in the past two years, she said at this time she respects my wishes to not start medication and will monitor me. I don’t know if it was gluten, sugar or just coincidence( I doubt that last part) but all my doctors admit that if it weren’t for the MRI’s and Lumbar puncture results they wouldn’t think I had MS(the MRI has two small very light areas, my doctor said it looks beyond well for someone with MS, she wouldn’t expect the symptoms I was having), however when I mention could it be the gluten , or sugar they all act like I am crazy. I am not in denial about MS, I just want to know what is really happening. Two years mysteriously symptom free almost immediately after changing my diet causes one to question things. Well that is my story……I hope some day someone will be able to tell me what is really going on. If that is MS fine, if it is really basically getting poisoned from gluten, or sugar because I can’t handle it then that would be nice to know. I had some gluten free candy around Easter(very little) and it was about a week of hell. Who knows.
Check out Dr. Terry Wahls. She reversed her MS with diet and talks about how eliminating gluten (among other things) is a major component.
My 12 year old son suffers from constant exhaustion, has had a serious bout of pneumonia, constipation, gas, diarrhea, athletes foot, and is sick a lot of the time. 🙁 We had him tested for Celiacs but it came back negative. I am gluten free and have never felt better. He thinks what he experiences is normal and being gluten free is too hard.
Stephanie,
I think that you know the answer. No 12-year-old wants to be different and they all want to eat pizza. My two kids had to stop eating gluten four years ago at about 11 and 9. Yes, it was difficult but now they know they do not want to go back to feeling yucky. Get the Cyrex test Chris is talking about because you will know for sure (and also find out if there are any other food sensitivities.) Gluten intolerance compromises the immune system and that is why he is so often sick. I implore you to put your foot down because it only gets worse. Autoimmune diseases. I am writing a book right now that has some great ideas for the revival of families through the right attitude for sticking to the gluten free diet. Our children are my heroes!
My son, was diagnosed at 2 1/2 with Failure to Thrive. We were not told about the Gluten aspect! He was extremely shy, and small for his age and cried easily. At 10 he started to struggle with concentration with school. At 14 phobias and irrational fears. At 16, he was having major allergies to bees, cucumbers etc. . . bloody noses, concentration issues and unwarranted anger. I finally decided to have both of us tested for Celiac. I have a Celiac gene and a GS gene. The stool test showed sever damage. He has two GS gene’s, the Enterolab described, as worse than Celiac, which was all too true, it was affecting his mind. His stool test showed the upper end of moderate damage. We consider him Celiac because his symptoms were so much more acute. Three years later, after being Gluten free, DF, and soy free, we are on the mend. Any accidental ingestion of wheat causes us both extreme reaction. We will be gluten free for life.
As a mother I KNOW that that has been such an ordeal for you! I am so proud of you both! You are not alone. Keep up the fantastic job you are doing!
sadly i have to agree with all the negative comments both my son and i have encountered from all family members who arent affected. this disease is really hard to handle for this reason mainly. add to that, never being able to eat out and having to make all your own meals three times a day/finding fresh produce every 2-3 days and you get tired. Its too bad that ppl who arent experiencing these symptoms wont try giving up sugar and wheat (and just plainly believe) just to see how it makes them feel better. Carry on Fellow Soldiers! 🙂
Thank you for your post and the post of all fellow sufferers. It is sometimes very lonely when you are the only one in your family or circle of friends who has to deal with food issues. Food is such a part of our lives that getting through any special occasion can be a challenge. I can’t count the times I have heard “Try just a taste” and have been told that gluten issues are a fad.
Two days ago I decided to go ahead and eat “just a taste” of something I should not have. I am still experiencing the result. I am in pain AND angry at myself.
Thank you for this forum – for good advice and for the knowledge that I am not alone in this.
No, you are not alone! Any many of those family members are probably also gluten intolerant. We cannot tell others what to do but we must remain strong and never have “just a taste.” I really understand how tiring it is but I want to encourage you and others to carry on. There is so much more to life that eating, but if eating is important (and it is) make it the very best that you can. Be adventurous. I don’t know if you cook but you can create great GF DF food! Have you ever tried sweet potato starch noodles? Get the thin ones from an Asian market. Garlic, ginger, red bell peppers and green onions are not usually allergens… and if the folowing don’t bother you, try some sesame oil and tamari (soy) –if they do, a little Chinese cooking wine is good to throw in with the veggies while they are cooking. I get carried away when I think about food!
I am an ICU nurse. I have a general skepticism of fad diets and “vitamin” supplementation. I have been taught to believe that for optimum health you should eat your five of vegetables and eat less calories than you use.
Approximately 5 years ago I developed sudden onset chronic hives with occasional angioedema and mouth/tongue swelling. I went to my doctor who sent me to an allergist who told me I was near 40, harmonal, and normal. He said I had sudden onset allergies to outdoor things and no reason to consider a food allergy. He gave me new medicines and sent me home.
After 5 years of increasingly worse symptoms, increasing episodes of hives, multiple medication trials, additional inhalers and the occasional epi pen for airway obstruction, I ended up with an anaphylactic reaction that took massive amounts of inhaled epinephrine and IV steroids to stop. All I could imagine was that I would end up on a ventilator like one of my patients.
I picked a new allergist and did an autoimmune diet. After 5 weeks I did an allergy skin prick test as well as a huge series of blood tests. He discovered that I have Hashimoto’s disease with euthyroid function, as well as an IgE positive for both wheat and eggs.
I am still gluten, dairy and egg free and after 8 weeks and have had an absolutely amazing recovery. I have been hive free for the first time in 5 years. (Except for the one day I tried to reintroduce eggs to my diet.) I have had an amazing reduction in hand and ankle inflammation (I have terrible arthritis which “can’t possibly be rheumatoid” even though I have never had an RF panel but my Sed rate is at the top of high normal. ) I feel better, I look better, (my husband comments that my eyes look brighter and my face isn’t as puffy all the time), and although I have only lost about 12 pounds in 8 weeks, I can tell a huge difference in my energy levels, my mood, and my ability to deal with intense stress, which is a daily part of my job.
My regular doctor thinks It is “a bit extreme” to eliminate eggs and wheat since the IgE showed only a “mild” allergy and that my Hashimoto’s should be left untreated until my thyroid starts to show low TSH levels. She thinks my autoimmune diet is unrelated to my symptom relief!!! How can a doctor discourage a better diet as extreme while encouraging a patient to completely ignore a known autoimmune disorder that is proven over and over by respected scientific research to be linked to other autoimmune disorders??
This experience has really opened my eyes to how absolutely closed minded most doctors are to the science of eating better to improve your health. It is NOT just about calorie consumption, but about the QUALITY of the calories we consume as well as how our individual bodies REACT to these calories! Instead of listening to our bodies we simple ignore the symptoms or hide them completely with medications. General Practitioners need to open their eyes and treat the whole patient starting with the cornerstone of nutrition.
That is quite a story Marti. My 19 year old daughter has Hashimoto’s and I had her allergy tested and I was shocked that she had no allergies at all , yet some foods make her heart pound so hard you can see her neck moving in and out.
Cheryl, a few thoughts:
Toxins and auto-immune reactants have effects on the body also when ingested. These will show symptoms similar to allergic reactions. Also, people who are overmethylated have low allergy levels, but great sensitivity to foods and chemicals.
For a list of the other features of overmethylation go to the bottom of this page:
https://liveto110.com/93-overmethylation-undermethylation-dr-albert-mensah/
I’m not saying gluten isn’t involved, but just that there can be other causes of severe reactions to foods. Has your daughter been tested for toxic metals (hair analysis, etc.)?
Cheryl, I also have Hashimoto’s and have known for a long time that certain foods make my heart pound. Only recently I connected this reaction with foods containing tyramine. which is a natural amine found in all foods but much higher in foods that are aged, fermented, pickled ( salami, cheese, sauerkraut, smoked salmon, anchovy paste, etc… ), in foods that have been stored for a long time ( nuts, dried fruits…) and also in overripe fruits like bananas, oranges and avocados.
I am sorry to hear that your doctors don’t take you seriously. There is a great Facebook support group for Hashimoto’s and gut issues. It’s called; FTPO-thyroid topics (for thyroid patients only) google it and make sure to put in Facebook in your search, there are many different issues they deal with and you have to join each group to post by hitting the “join” button. For example; there is one called FTPO- thyroid issues for patients without thyroids, or Hashimoto’s, or patients with adrenal issues. They ask you to do this so that they can be sure you are a real person and not a multi-level pyramid sales hack. The administrators of the group’s are great and can even look at your labs and help you understand them. Check them out, they saved my life after I was told my TSH was fine but I wasn’t converting T4 into T3, the only active form of Thyroid hormone. Good luck!
Will make this as short as possible. I am sensitive to gluten but no celiac disease I’m aware of. I had a thick green vaginal discharge for 6 years that had been tested over and over and over, treated with creams, antibiotics,etc. Doctors stumped, had no idea what it was. I also would eat gluten and immediately get a uti. Quite by accident I decided to go on Adkins diet because I remembered how good I had felt 15 years prior when I was on it. A few days into the diet and the discharge stopped. My frequent UTIs also stopped. I went to the doctor explaining that gluten was causing my frequent bladder infections (various doctors and nurse practitioners thought I was crazy) and I needed to be tested to see if I was allergic to gluten. The physician seemed almost angry even discussing anything about gluten. He did a blood test and said I did not have any allergies or sensitivities, which I guess was supposed to pacify/ satisfy me into believing him. I have found out through research that the test he performed was (of no surprise) totally inaccurate and rarely produces any results of allergies. So basically, my gluten sensitivity does not effect my gut, but it does irritate my urethra and bladder. And… I also notice that eating gluten causes me to have carpel tunnel type pain. I had to wear wrist brace a lot but now I never need it. That’s just where my inflammatory response effects me I guess…..
Loretta,
I have the same issue with chronic UTIs. When I moved to college a couple years ago, I lived with UTIs constantly and then before spring break my work out buddy wanted to give up gluten for a couple weeks. During those weeks I didn’t have any issues with my UTIs. However if I accidentally ate gluten today, I would wake up to a UTI.
I do have a constant odor to my urine and a cloudiness. It seems that it won’t go away unless I take a prescribed antibiotic that I have on hand. I went to a urologist about a year and a half ago and he performed a cystoscopy and found nothing wrong, but I haven’t since contacted him about my suspicions of being sensitive or intolerant to gluten.
It’s nice to know other people have been through this as well; one time I was getting a physical and there was some medical student in training helping give my physical who fought with me about how I was wrong and that gluten should have no affects on the urinary tract.
I am trying to find an allergy/immunology specialist so that I can see if they can diagnose me so it’s “official”. I’m hoping I can find the right doctor that will believe me!
Hi, I have been suffering silently for some time now with IBS, I finally went to my GP around Christmas time as I was constantly going to the toilet and feeling generally tired, achy and irritable. She recommended FODMAP although I went through my diet with her and turned out I was eating bread, pasta etc almost every meal! She still said to do FODMAP. After 2 weeks of following this religiously I felt 100% better, another week later, we introduced milk and I felt a bit ill, but stuck with it assuming it was because I hadn’t had it and now it is fine. All other groups have been introduced and I have been perfectly well with them. I had a hot cross bun last night as my test for gluten, felt a bit crampy but that was all so thought it to be like the milk ad I should persevere but then today I ended up in bed for 2 hours with headache, awful cramps in my back and abdomen, aching all over like I was getting the flu and went to bed in tears! Woke up and felt a bit better, still have a headache that tablets won’t cure. I am not sure if the symptoms for NCGS can be so bad the next day but not the same day? My GP still says it isn’t NCGS even though everything else on FODMAP is now okay. She says I need to still eat something with gluten tomorrow and Tuesday and make a note of my symptoms but now I am scared to, anyone else had a similar experience to this? Thanks
It is my experience that it can take minutes, to hours to days for a reaction to show up.
Great article!
Advice needed – – I have a 15 yo with peanut allergy and tons of seasonal and food allergies. Hoping to get her off her monthly injections. Headed to naturopath in a few weeks, stopping in at the GP tomorrow to ask for updated CBC, Thyroid antibodies, homocysteine blood test, Cyrex Array 3, Dunwoody labs Advance IBA – anything else that I should think about or ask for?
There’s no doubt food is the source of her issues, but I need to narrow down and *prove* it to her – her diet is drastically better than even a year ago, but her go to is always sugar and gluten… it’s a huge stressor in our relationship – I need help!!
I am a 54 year old female who developed sensory neuropathy in my feet about 5 years ago and RLS 8 years ago. After the neuropathy developed, I had DNA testing for alpha gliadin which turned out positive in most categories of potential manifestations(?) I’ve read a lot about the connections between these 2 maladies and their possible tie to NCGS…but like you’ve said, it’s hard to explain to people WHY I feel like I should avoid gluten…and it’s hard for me to actually DO IT when I’m NOT having diarrhea every time I eat gluten. I’m doing my best, usually, nothing has changed but nothing has gotten worse either. It’s frustrating!
I have recently tried gluten free or more specifically wheat free back in Sept of 2015. I got very ill from withdraw at about day 4 but on day 6 felt fantastic with no more joint pain and slept great. I then started letting small amounts of wheat in diet to see how I can handle it. Then recently after watching gut summit I realized my blood sugar has been spiking and dropping so I got a glucose meter and sure enough I was not balanced. So I went off all grains for a few weeks and just the other day Jan-2016 I had one piece of bread with meal for supper. I woke a couple hours later with sinus congestion, nausea, heart palpitations, shakiness with joint pain. I am done with wheat for good.
I found out by my brother obsessively making easy/lazy food to where it had to go on bread/buns, my period would come on sooner than it was supposed to, my face would break-out, I’d be tired and sleep long hours, and my teeth would go discolored, my stomach would bloat,… I think protein was leeching into my blood, as well as I wasn’t getting any nutrients to help my teeth, as they were soon breaking apart once again.
I have a rather long story, but in short: my brother kept and still keeps finding ‘scapegoats, thinking that all dentists are right about teeth being glass and that because a white cloth is stained by tea/coffee/wine that teeth are just like that white cloth, when they are not, nor should they break apart when you’re barely chewing something.
I do think though that I can’t have whole grains, Every time I eat brown rice, I have almost the same problem with my teeth turning brown/discoloring. I think even if I eat whole grain quinoa, it’s also problematic. So I’m thinking I can’t have whole-grains, but I also staying away from wheat, which my family still doesn’t understand how to avoid cross-contamination.
I still do sleep long hours, but only if I’ve not gotten enough protein or was working out a lot. I also have a problem with tomatoes, as they are nightshades and cause my skin to break-out in dryness, or too much yeast. I do not think human bodies were meant to eat grains, unless they are sprouted, but these industrial companies and the FDA don’t care about human-health, all they care about is lining their pockets with money and to heck if not sprouting the grains wreak havoc on human bodies.
My teeth started breaking when I was 19. I didn’t find out for another 30 years that I was gluten sensitive, malabsorbent and that I don’t metholate. I suggest you ask your doctor to check your vitamin D levels, get off the gluten and find out if you have the metholation gene or not. It can save your teeth and your health.
I suspect I’m celiac, but haven’t eaten gluten for years, which my brains thank me for. I cut dairy and coffee out completely as well, but would love to learn more about what’s going on inside with Cyrex 3/4, SIBO (I think I’m a methyl gal), and hormone testing because I’m not sure what is my chicken and what is my egg – all in due time!
I have NCGS and suffered for 10+ years with Fibromyalgia and could not determine the reason. I finally read a book by JJ Virgin and it helped me see all the little pieces of the puzzle about food. I did an elimination diet and added each thing in individually like she recommended. I found that gluten and eggs gave me severe joint pain and after giving them up my Fibromyalgia disappeared. That was 4 years ago and I have never looked back. Changed my life!
Hi.
I am suffering fibromyalgia too and i started gluten free diet for 5 months. I didn’t eat anything with gluten even mayonnaise. I don’t eat night shade vegetables. But nothing happen to me. The pain is killing me. All the time I have pain in my neck shoulders, and backache…..none of pain killers help me. I can’t sleep well and I’m so sad
Gluten could be slipping through the cracks. It’s not easy eliminating every bit as it takes time to learn what acronyms on packaging are gluten and which are not. Also, cow dairy must be eliminated as well as, according to Dr. Kenneth Fine, about half the people who are gluten-intolerant are also dairy- intolerant. If I eat dairy, I get those wide-spread weird pains the next day on top of swelling in my knuckles where I can’t make a fist. I can eat sheep or goat yogurt and cheese without a problem, but I eat very little of these.
I’ve got something going on. I don’t know if I would show up with celiac on the usual tests and I don’t really want to take them because some of them require eating gluten and I don’t know what my doctor would pick. Paying for my own Cyrex testing is kind of out of the question financially. Since there’s no dietary requirement for wheat, I just don’t eat it. I’ve had a few minor slipups (I know, they’re not *exactly* minor, but we’re talking traces) but nothing deliberate.
The big reason I’ve been able to ditch wheat is because I get almost no migraines off it. I went off wheat experimentally at the beginning of 2012 because I had a weight-loss stall so I was trying to pinpoint what might be causing the plateau. Went on a self-imposed elimination diet starting at nearly all meat and then reintroducing other things. I went through January and February with no wheat and then had a plate of noodles in March. Got sleepy within half an hour and still had to drive home. Was convinced. Also found it easy to ferret out what little trace gluten I was still getting because if I went to my favorite Mongolian Grill restaurant I would feel like a slug half an hour after *that*. I don’t go there anymore because I don’t feel like being limited to lemon sauce and there’s always the risk of cross-contamination.
And in the midst of all this I came to realize that my headaches had largely gone away. Understand that this began in early 2012, I was focused solely on weight loss, and I had had a pretty noticeable uptick in migraine incidence and severity in the latter half of 2011. No idea why. Maybe my body was on its last legs putting up with my wheat intake, which had always been pretty high–I guess I was addicted to the stuff, which I’ve since heard can happen. I was even using those stupid Dreamfields noodles on low-carb! But I was getting headaches much more often, and was getting visual prodrome which I had not ever done previously except one time when I was under a lot of stress. So this was all scaring me. So having it suddenly disappear was amazing to me.
I keep telling people this, and I’ve had my own friends make fun of the gluten-free movement KNOWING what my experiences have been. Or else they weren’t really paying attention and I guess I know now who my friends are. I suppose my words mostly fall on deaf ears. But I tell myself maybe someone’s lurking and learned something. Migraine is a risk factor for stroke and I’ve lost three of my four grandparents to cerebrovascular events. This isn’t just a matter of discomfort.
(That said, not everyone can cut back their migraines going gluten-free. It works for some people, but not for others. Worth a shot, though, if someone out there hasn’t tried it yet. What have you got to lose?)
I went gluten-free for convenience: my husband was pretty sure he was gluten-sensitive, and I didn’t want to tempt him with all the gluten-laden items I love in the house, and I didn’t want to start eating separate meals. It was a fun challenge to find a bunch of new recipes that are gluten free, plus, I must admit, I thought I might lose a bit of weight.
My husband and I had two friends that were sensitive to gluten, fairly early on, that really opened our eyes to the condition. The first (not diagnosed as gluten intolerant: just allergic) gave up gluten in 1997. Along with being more healthy in general, his personality changed from being slightly flighty to the most philosophical and thoughtful man. He died in 2016 of Lou Gehrig’s disease. The second friend we knew from our college days and would describe him as outgoing and adventuresome and on his own schedule. I.E. always late, undependable. In 1997, he also found out he was “allergic” to gluten. I don’t honestly know if he gave it up. 10 years ago, now a family man, he was diagnosed with ADHD, which he began treating and is now a bit more dependable! Both men mentioned a fog being lifted.
In addition, my husbands’ sister has had migraines for 50 years. She has tried everything including prescription medication. Nothing helped until she gave up gluten.
My husband is a unique man – very health conscious. He could “feel” his immune system “weaken” when he ate gluten. He hates being sick, so he just stopped eating it. Results: He hasn’t been sick (colds ALWAYS turn into sinus infections for him) for 5 years. Me: I’m not as sensitive, but I DO feel better, I’m less bloated and my adolescent skin has FINALLY cleared up.
I am dumb-founded how socially unacceptable it is to be gluten-free. A lot of it comes from the most outwardly un-healthy, but I also get it from family members in the restaurant business!!! They compare it to being a vegetarian, which is, well, I guess it is just naïve. But it doesn’t seem to help to lecture.
Hope this helps you, it certainly helped me to let it all out!
I gave up gluten some 18 months ago, although I admit every now and then I do cave into 1-2 small local bakery true butter cookies. Since then, I’ve been migrating my family to organic produce, more herbs and spices, more plant-based food, and a tremendous reduction in processed foods.
My symptoms were NCGS, I stumbled upon the book Wheat Belly, recognized that I could be a poster child for wheat belly, and it changed my life. I went through almost a week’s worth of withdrawal from wheat – I never, ever thought I could be addicted to wheat, it never crossed my mind. I was the queen of whole grain, whole wheat flour, added wheat germ to meatball recipes instead of just plain old breadcrumbs, wheat germ on yogurt, wheat flour, whole wheat pancakes and waffles…..you name it. I thought I was being so health conscious for myself and my family of 7, and all the while I was poisoning myself and family – some are more gluten intolerant than others.
I haven’t had a sinus infection in 18 months – I used to get a sinus infection 4 times per year, almost like clockwork. Bronchitis would set in at least once a year from the chronic sinus issues. I had constant sinus headaches, I don’t know if some of them classified as migraines, but I would have to lay down in a dark room to find relief. ear aches every night while I slept that woke me up. I could feel the fluid move from one ear to the other when I rolled over to relieve the intense ear aches EVERY SINGLE NIGHT. Every conventional doctor I went to was more than willing to write a prescription, but no one looked to the source of the problem. I am so grateful that I stumbled upon Wheat Belly, and to Dr. Davis.
Another symptom for me was chronic joint pain. I was terrified that I had some sort of early onset arthritis. It hurt to get up from sitting in a chair. It hurt to bend down and pick up something I dropped.
Mind you, I never struggled with my weight, and then in the last 8-10 years or so, BAM, I gained more and more weight, no matter what I did. I was always thin as a child, teenager, and well into my 30’s. So….after going off gluten, I lost 50 lbs. in 8 months. How unbelievable is that?
Wheat/gluten, for me, is evil and toxic. Cyrex Array 3 would have been interesting back, but now I’m not sure it would read anything for me now without ingesting a lot of gluten/wheat, and I’m not willing to do that just to have a test validate what I already know.
That said, one of my daughters had serious eczema issues for years – she is currently in college. She is also gluten free, but occasionally flares up, either by accidental contamination or there may be some other trigger. Soy is an interesting possibility – soy floods the American food market – it’s everywhere. The point is, my daughter is set to do the Cyrex Array 10 next week which test for many types of food intolerances.
Cyrex has a very informative website, and if you call their toll-free telephone number, they are extremely helpful and will guide you through the process.
Dana, I am so happy for you discovering the wheat cause of your migraines! I want to encourage you on your gluten free diet. Most of these people who try to dissuade you from your proper diet have no idea what they’re talking about. The reason you cannot go to Mongolian Grill is that EVERYTHING is contaminated with soy sauce (which contains wheat.) I suggest that you NEVER take any test that requires you to have even “small amounts” of wheat because ANY is too much. –and don’t eat at Mongolian Grill. Our family always travels with something called Gluten Flam which is basically enzymes that help us to quickly destroy gluten with which we most probably have been contaminated either at friends, family or at a restaurant. There are other brands of these gluten destroying enzymes to help us but not to be used to counteract, say, a piece of bread, or a Chinese dish. (I know that you would not do that, anyway.) We must be very responsible because we should try very hard not to ever be contaminated as it could kick into motion some new autoimmune disease.
How can you get this test in Australia as Cyrex doesn’t ship from there?
Cyrex is not available in Australia. I work with patients in Australia and the US and use Cyrex extensively with my US patients. Sadly, much of the functional medicine testing is not available in Australia (yet). I typically recommend an elimination diet if advanced testing is not available and/or standard testing was unremarkable.
I tested positive for gluten and casein sensitivity via stool test. Then I took the cross-reactivity test and lit the whole thing up. If eating one of these cross-reactive items is the equivalent of eating gluten, then it would be necessary to find out everything that cross-reacts for me, and eliminate it. The problem is, the list of potential offenders is constantly growing, and might even include substances produced by gut bacteria. I don’t see winning at this! At this point, I don’t experience much health difference between eating everything but gluten, and being on the gaps diet or low carb paleo, which cause me to loose way too much weight. I haven’t had gluten in 5 yrs, but doubt I would have an overt reaction to it. Thoughts? (I have low level Hashis, osteoporosis, endometriosis, a skin issue, and possible head injury mucking up the mood and cognition outcomes)
Gluten breaks down to glutamate which causes a lot of the symptoms associated with gluten sensitivity. You would benefit from going low glutamate and low aspartate also. See the MSG Myth website.